Hi KD,

I am sorry you seem to be getting the run around on diagnosing your ailments and getting help for them.  You raised many points.  Neurontin helps me for ALL the same symptoms you described.  It helps to calm the burning, tingling, numbness and stumbling.  Without it I could not walk.  At first (for about 2 weeks) my body felt drunk, but I adjusted to it.  It is the only thing I’ve ever found that helps.  Other medicines can help stop tremors but you have neuropathy.

I too have problems up and down my spine, including a herniated disk and an annular tear in my sacrum but it is the cervical area that contains ALL nerves for our legs, arms, organs, heart, lungs etc.  If you or I are in terrible pain in our lumbar area, the surgery requires cutting through a lot of bone and the nerves affected are only ones that branch out at that level, i.e. to the waist and legs.  But the cervical area contains ALL nerves.  The nerves branch out of the spinal cord as they go down the spine close to whatever they control.  The cervical receives so much attention, in spite of lower back pain, because the nerves to your organs, limbs and all working parts below the face can be severely damaged if you have stenosis in the cervical area.  Your heart could stop your arm, legs, bladder, bowels, etc.  One can die if the cervical area is not treated in one fashion or another.  You can only be in severe pain, a sore ass from sitting (riding in a car or on a horse!?!?!) or have difficulty walking…but not die, cause permanent organ damage or any of the previous from a cervical issue.

I am sorry about the MG issue.  Sometimes I fear they will come to me and tell me I now have MS.  I do not mean to make a joke of that as MS is certainly no joke.  I’ve read so many people in this group say that doctors chased down one avenue or another when all along we said it was our neck or our back.  We seem to know our bodies best.

I knew a dear sweet friend who suffered great pain.  She got so bad she could not hold a job.  They eventually diagnosed it as Fibromyalgia.  She got shots in ALL the trigger points but she never got better.  Neurontin was the only thing that really seemed to help much.  Three to four years later an MRI taken at the height of her pain showed a herniated C3 disk.  The whole time it was a disk issue.  It was just that the disk tended to move and previous MRIs did not capture it at the “proper” time.  She had an ACDF of C3 and today she is off disability and leading an active life again.  I am not trying to suggest that Fibro does not exist but sometimes it may be disk related.  My aunt was misdiagnosed with Fibro when she also had a disk issue.  My aunt has the exact same symptoms you described and was just given Neurontin.  I do not know of a drug that does the same thing.  It also helps prevent my seizures, so for me it serves two purposes.  I could not walk or deal with the neuropathy I have without it though.  It is a lifesaver for me.  I wish you could get it to work for you.  I assume you slowly took a little at a time over several days to weeks until reaching your final dose to let your brain adjust to it.

Do not have a surgery unless it is necessary.  But do not do nothing either, allowing it to get worse and worse and cause permanent damage.  Surgery (and especially fusion) sucks, you will not be able to drive for a few months after the surgery.  Even if you think you can…if you get into an accident wearing a collar, you will lose as any attorney will state you were negligent and could not see as you could not have full range of motion with the collar.  No disrespect, but you would be stupid to drive without a collar (given the choice) as it is your ONLY protection.  But if a surgery is required…find the best.

I mentioned the above because you said your biggest fear was having surgery make you worse…it can.  Thus find the BEST…IF…you need one.  If you have fusion, studies have shown that fused disks place pressure on the disk above and below the fused disk(s)…thus causing possible harm to them as you worry.  But permanent organ damage or death due to putting off a badly needed surgery is not the solution in comparison.  Explore all SAFE options first.

I hope some of this helped.  KD, regarding pain medicine, sadly many doctors are afraid to prescribe narcotics for fear of their licenses.  Let them go through this kind of pain and just apply het or cold.  Hmmm.  My oncologist has people on pain meds until they die (but so do some neurologists) so he had no problem seeing my obvious pain and related high blood pressure and offering to manage my pain.  I am blessed with a few really good doctors.

I wish you and everyone else good health and happiness.

Best regards,

Greg